Nearly four years after the emergence of SARS-CoV-2, an estimated 65 million people worldwide living with Long Covid still do not know whether recovery is within reach.
Because Long Covid is an umbrella term encompassing diverse experiences, and there is a lack of long-term research, it’s difficult to draw conclusions about the rate of recovery for this illness.
Definitions for Long Covid sometimes vary, but the illness can be marked by 200 or more symptoms ranging from severe fatigue to cognitive dysfunction, and is generally believed to impact as many as 10 to 30 percent of people who are infected with Covid-19. However, patient anecdotes, research into related illnesses, and a recent study examining Long Covid outcomes after two years indicate that the road to recovery is often “long and arduous,” as Long Covid researcher Dr. Ziyad Al-Aly puts it, and experiences of recovery or relief can be precarious and short-lived.
What does remission mean?
The word remission is most commonly associated with cancer, said Dr. Al-Aly, who is the chief of research and development at the Veterans Administration St. Louis Healthcare System. “The implication is that…we got it under control,” he said.
Dr. Monica Verduzco-Gutierrez, who lives with Long Covid and is the Chair of Rehabilitation Medicine at the University of Texas Health Science Center at San Antonio, where she directs their Long Covid Clinic, said she is familiar with the term from the context of multiple sclerosis (MS).
“There could be periods where someone is stable, periods where they’re doing much worse,” she said. While remission can sometimes mean a complete recovery from all symptoms, Verduzco-Gutierrez prefers to think about it as a reduction. “Think of a flame or a fire,” she said. “Is it down to a simmer? That’s…a remission. Something, like a lighter fluid, can cause a relapse.”
The term remission has also sometimes been used to describe fluctuating symptoms in people with myalgic encephalomyelitis (often abbreviated as ME/CFS) and dysautonomia, two diseases that pre-date Long Covid and are commonly diagnosed in Covid-19 long-haulers.
Dysautonomia is an umbrella term for a complex group of medical conditions defined by dysfunction of the autonomic nervous system — the component of one’s nervous system that regulates involuntary processes, such as blood pressure, body temperature, heart rate, digestion, breathing, and more. ME/CFS is a complex, multi-systemic chronic disease that is often characterized by post-exertional malaise — the worsening of symptoms following physical, mental, or emotional exertion.
According to the advocacy organization #MEAction, research indicates that nearly half of all people with Long Covid have myalgic encephalomyelitis. A 2021 paper found that 66 percent of respondents with Long Covid “reported autonomic symptom scores significant with moderate to severe autonomic dysfunction, suggesting a high prevalence of dysautonomia.”
While remission as defined as an absence of all symptoms may be rare for people with ME/CFS, waxing and waning symptoms are not entirely uncommon, and full remissions have occurred. Full remission for people with dysautonomia and postural orthostatic tachycardia syndrome (POTS) — a subset of dysautonomia — may be more common, though Dr. Tae Hwan Chung, Director of Johns Hopkins’ POTS Program, cautions that he has not personally seen it.
Lauren Stiles, president of the advocacy organization Dysautonomia International, said she is aware of cases in which someone with adolescent onset POTS experiences remission in their early twenties, only to experience a resurgence of symptoms after a triggering event.
Is Long COVID remitting-relapsing?
Dr. Al-Aly cautions that because Long Covid is a multi-systemic illness that manifests in diverse ways, it may be dangerous to imply that all symptoms can remit and relapse. He likes to classify Long Covid symptoms within two large constellations: First, fatigue, brain fog, and symptoms related to dysautonomia and post-exertional malaise — which he believes can be cyclical — and second, metabolic and cardiac problems, such as new onset diabetes or hyperlipidemia, which typically do not remit.
He also pointed out that because the term remission is so often associated with cancer after chemotherapy, using the term for Long Covid may imply that there are good treatments for sometimes cyclical Long Covid symptoms, such as fatigue, which there currently are not.
“I definitely see relapsing-remitting,” Dr. Verduzco-Gutierrez said. “There are some patients where we can get their symptoms under control … and then something happens in their environment…that can kind of bring on this re-emergence of some symptoms.”
Andrew, 36, who spoke on condition that we identify him by only his first name for privacy reasons, agreed. “In my own experience, it’s been very nonlinear…sometimes it’s two steps forward, three steps back.”
Steph Fowler, 42, who has been living with Long Covid since the summer of 2020, has also experienced short-term relief and relapse. “Certain symptoms will relapse and remit,” she said. “Feeling Long Covid consuming your entire life might relapse and remit.”
Gina Assaf, a Covid-19 long-hauler and founding member of the Patient-Led Research Collaborative, said her team has seen remission and relapse in their research and in online groups. Their recent study examines long-haulers’ experiences returning to work through an episodic disability lens commonly used in the context of HIV.
“We framed [Long Covid] that way because…the experience and characteristics of the disease and severity can vary over time,” she wrote in an email. “We have seen…many examples of remission and what appears as full recovery to the[n] later relapsing and having varying severity of symptoms reappear.”
Experiences of short-term recovery
Andrew believes he first contracted Covid-19 in March 2020. He was bedridden for a year after developing Long Covid, during which time he did not work. After about 15 months, he started to see improvements. By September 2021, he felt like he had returned to about 90 percent of his previous baseline health. “I felt sharp,” he said. “I didn’t feel the post-exertional malaise. I was able to pretty much hop back into regular life.”
Fowler also experienced an eventual improvement in her symptoms, nearly two years after her initial infection. “It wasn’t as if the insomnia totally went away, but it was more sporadic instead of every single day,” she said. The new cascading symptoms she’d been experiencing since she got sick seemed to stop. “I still had fatigue, I still had brain fog, I was still working in a reduced capacity, but I was starting to feel like there was a possibility of being able to…resume a little bit of the life that I had had.”
Jessica Lovett, 44, got Covid-19 in June 2020 and was sick until October 2021 when she says almost all of her symptoms disappeared, except for tinnitus, slight vision issues, and PTSD from the experience. “I was even able to exercise again…and was able to land a job,” she wrote in an email. “I traveled for work [and] was able to be a vivacious mom again without crumbling the next day. … My chest pain went away, and I could breathe easily.”
Andrew, Fowler, and Lovett are not alone. I, too, contracted Covid-19 during the first year of the pandemic, and declared myself recovered several times after experiencing significant relief at various points in the months and years that followed. But, my journey, like Andrew’s, has not been linear. Old and new symptoms have returned following periods of stress, changes in weather, and new infections. This, I have learned, is not entirely unusual.
Why do people get better? Why do they get worse?
Very few people I spoke with were confident pointing to a singular factor that they thought had improved their health, though most mentioned some combination of rest, treatments, and luck. While there are currently no treatments for Long Covid that have been approved by the Food and Drug Administration, Dr. Verduzco-Gutierrez says activity modification, Enhanced External Counter Pulsation (EECP), and treatments meant for dysautonomia and POTS can help some patients recover or experience periods of remission.
For myself, Andrew, and Grant Paulsen, 25, who was infected in 2021 and lived with Long Covid symptoms until the spring of 2022, when he began to experience significant improvement after a vaccination, Covid-19 vaccines may have provided temporary relief — though these vaccines have also been known to trigger worsened symptoms in some patients.
“If we knew what got everybody well, we’d all be doing it,” Stiles said. “I think what’s easier to spot is what can make [symptoms] flare again.”
Infections and reinfections
Dr. Verduzco-Gutierrez and Dr. Al-Aly both mentioned that Covid-19 reinfections and other types of infections can lead to a re-emergence of symptoms. “In my own life experience it’s a bit scary, because I’m doing well for now, but what happens if I get sick again?” Dr. Verduzco-Gutierrez asked.
Andrew believes his symptom relapse was triggered by taking antibiotics for a bacterial infection in December 2021. “Within two weeks of finishing my course…I started noticing [post-exertional malaise], a racing heart and…the return of other symptoms.”
Lovett was reinfected with Covid-19 in October 2022, and initially felt the experience was better, because she took Paxlovid and knew more about what to expect. But, she says “the Long Covid monster returned” after she participated in a geriatric dance class at the YMCA a few months later. “I crashed and couldn’t get back to baseline. I had to choose between working or being a mom, because I didn’t have energy for both,” she wrote.
When Fowler was reinfected with Covid-19 in March 2023, her short-lived period of improvement ended entirely. Her insomnia, brain fog, and neurological symptoms returned, along with new migraines, vision, and speech problems. She characterizes the experience as devastating. “I don’t know how to describe how gut-wrenching it is to have felt a little relief, and a little bit of hope and have it ripped away after doing everything that I possibly could to protect myself from getting reinfected,” she said.
Stress, exercise and weather
Stress and exercise also often seem to play a part in symptom relapse. Paulsen, who has experienced several periods of relief and relapse and one significant period of full remission, recalls exercising especially hard in the days that preceded his re-emergence of symptoms.
“I had been so stressed out with work and my personal life, on top of the changing weather, going out too hard, and then having two really hard workouts afterward and one drink,” he said. “It was the perfect storm of maybe just putting my body under [too] much stress.”
Exercise intolerance is well-documented in some people with Long Covid, as well as people with ME/CFS, but Paulsen’s experience is slightly different because he was able to tolerate exercise for months prior to his relapse.
Paulsen’s description of the weather impacting his symptoms resonated with me, as someone who has experienced the “seasonal slide” some people with chronic illnesses describe. Dr. Verduzco-Gutierrez said she sees Long Covid patients’ health worsen during “cedar season” in San Antonio, Texas, when allergens change, as well as during barometric pressure changes — which she said she believes can worsen migraines and chronic pain.
Lovett described feeling an alleviation of symptoms after she left Austin, where she lives, to spend the summer in The Philippines. “Austin…my hometown has horrific seasonal allergens, environmental factors, and extreme temperatures that affect my body,” she wrote. “I believe this place makes my ‘histamine buckets’ overflow.”
Fowler similarly has noticed her symptoms fluctuate with environmental changes. After her reinfection last spring, she began to develop what she describes as POTS-like symptoms when the weather warmed in July and August. Other symptoms worsened when the air quality deteriorated in Chicago, where she lives.
“Even with an N95 and the shortest time outside…it set off a flare,” she said. She was not able to work for a week, and experienced respiratory problems, cognitive functioning issues, and worsened body aches and migraines. “Now I am terrified of bad air quality days,” she said.
In a world where there’s no proven treatment that can trigger remission, but plenty of factors that seem to have the potential to worsen the health of a person with Long Covid, life can feel like a game of chance.
“I live on an immunological tightrope,” said Stiles, who has been living with POTS and Sjögrens syndrome for 13 years and experienced “significant illness” for about a year following a Covid-19 infection in February 2020. “If I take the right medicine and do the self-care management stuff…I can kind of keep my feet on the tightrope,” she said. “If I mess anything up…it’s very hard.”
Andrew echoed these sentiments: “It’s really hard to get better…. It’s really easy to get worse.”
Getting medical care
Getting medical care for a remitting-relapsing illness can be difficult when there are long wait-times. Paulsen, who lives in New York City, where there is a relative abundance of Long Covid care centers and specialists compared to other areas, still had to wait an average of six months to see the specialists he wanted.
This was especially difficult, because the waxing and waning nature of his symptoms meant that he was sometimes in a period of remission when appointments finally opened up. The remitting-relapsing nature of symptoms may present additional challenges for Covid long-haulers applying for Social Security Disability Insurance, who have to prove an ongoing inability to work for a year or more.
Fowler has had a similar experience, though her symptoms have never fully remitted. “There would be a flare-up of some type of system in my body for weeks or a month, and then that system would calm down, and a new system would flare up,” she said. “By the time I could see the specialist, that system was not necessarily still the same problem.”
Flawed healthcare systems
Stiles is concerned that these sorts of delays in care may exacerbate health issues for patients who are not able to be treated quickly, but she’s also worried that our healthcare systems are fundamentally not set up to treat these types of illnesses.
“There’s very few centers that are actually good at this even though…we have seen a lot of new Long Covid clinics get started,” she said. “There’s a big learning curve.”
Dr. Verduzco-Gutierrez echoed Stiles’ concern that not all providers treating Long Covid know what to look for, or ask about. Providers lacking information or time may struggle to adequately track a patient’s progress long-term.
She cautioned that if providers are pressed for time, focus only on test results or don’t ask about how a patient is functioning at work, their quality of life at home, or ability to manage certain tasks, they may fail to fully understand that patient’s health status. Covid long-haulers who have to change providers as a result of losing employment or having to relocate are also less likely to be tracked well by providers over time.
More long-term studies are needed
Dr. Al-Aly and Stiles both agreed it is difficult to draw conclusions about the future of Long Covid without longer-term studies. “I worry about if SARS-CoV-2 has some other tricks up its sleeve that we still haven’t seen yet,” Dr. Al-Aly said. “We’re still working with…four-year data at most, and none of us has seen, what are the consequences?”
He pointed out that we already know that infections can cause chronic disease — the gut bacteria helicobacter pylori can cause gastrointestinal cancer and Epstein-Barr virus can cause MS — and some viruses, such as human papillomavirus and hepatitis C, can cause cancer.
But, Dr. Al-Aly says these sorts of outcomes are typically only determined five or ten years after the disease onset, which is why he believes it’s so important to study people who have had a Covid infection over longer periods of time.
Stiles says these sorts of long-term longitudinal studies are crucial because people who seem to have recovered are often dropped from studies, but we know from patient anecdotes that these recoveries are not always permanent. “There should be studies that are going to track people forever,” she said. “That’s expensive and hard to do, and that usually requires substantial government investment.”
Dr. Al-Aly has conducted one of the longest Long Covid D studies thus far, which tracked health trajectories over two years. Using the DALY metric – for disability-adjusted life years – to estimate the quantitative measure of the burden of disease, Dr. Al-Aly’s team found that the total DALY for Long Covid was almost identical to that of heart disease or cancer. “Long Covid is a serious illness,” he said. “Most people do not fully recover, even after one year or even after two years.”
Dr. Verduzco-Gutierrez has seen patients make recoveries but she said, “it isn’t frequent, and it isn’t everyone.” She noted that recovery seems to be more common in patients who start out with fewer and more mild Long Covid symptoms.
A mismatch in recovery narratives
People like myself, Andrew, Fowler and Lovett, who have been sick for over three years, have witnessed a variety of outcomes in the patient communities we’re a part of.
“I’ve seen people get better. I’ve seen people deteriorate or stay the same,” Andrew said.
“I initially put some faith in these ideas that even untreated, this would only last for a year or 18 months,” said Fowler, who has seen media articles that emphasize a faster recovery from Long Covid than she’s experienced. “I now know too many people and I’ve heard too many stories in these online Long Covid spaces of people who only got better by not working…or did get better, took time off, and then as soon as they started trying to resume a life, everything came back.”
Her words resonate with me. When asked about my health, I often emphasize the lifestyle factors and privileges that I feel allow me to balance on the immunological tightrope Stiles described — being able to work from home with a flexible schedule, being childless, living near friends who can help out, and being able to afford regular testing, air filters and high-quality respirators.
“I know there’s these ideas that people will just get better, but it seems a lot like magical thinking without actual research…and understanding of all of the intricacies of Long Covid,” Fowler said.
